Familia, discapacidad intelectual y envejecimiento. Análisis de la calidad de vida familiar desde una perspectiva multidimensional

Abstract

This research contributes with data about perceived needs and family quality of life that allow facilitating resources and social-politic planning for families with over 40 years old members with intellectual disabilities. A total of 593 ‘Family Quality of Life Surveys’ (Summers et al. 2005; Hoffman, Marquis, Poston, Summers, y Turnbull, 2006; Verdugo, Sainz, y Rodriguez-Aguilella, 2009) were applied in Spain (Asturias y Castilla y León), furthermore 12 focus groups were done with parents and siblings. The study of a mixed design that involves both qualitative and quantitative methodology. Descriptive and inferential analyses were carried out in quantitative phase. This information was completed with the qualitative phase. We used NUDIST 9.0 to analyze recordings of spontaneous speech by focus groups, offering a solid basis to gain direct knowledge of families social reality. Results showed that ‘Family Interaction’, ‘Health and ‘Security’, and ‘Parental Role’ domains have a positive influence on family quality of life. However, the domains related to supports (‘Family resources’ and ‘Support of the family member with a disability’) indicated a low perceived satisfaction. They also showed concern for the future and siblings’ supports. The supports for parents aren’t adapted according to older careers needs. There is currently a lack of adapted supports, so this situation must be reviewed taking as references the deficit family quality of life domains. In conclusion, it is important to have an appropriate measure of family quality of life in order to demonstrating the effectiveness of existing policies and programs.